Category Archives: autism epidemic

Now that there is a real possibility of a cure for Rett Syndrome some time in the future, will it undermine the movement for autism acceptance and encourage those whose aim is normalization? Some will certainly see it that way. But in the short to medium term I predict that it will increase the tension between organizations like Autism Speaks that are funding research into genetic causes for autism and those like NAA and Safe Minds who think they already know the cause and the cure and are only interested in research that confirms their prejudices.

Bernie refers to Bernard Rimland, the recently deceased founder of the Autism Research Institute [ARI] and Defeat Autism Now! [DAN] Rimland has done more than anyone to promote the idea that autism can be treated with alternative therapies like megadoses of vitamns, special diets and chelation for heavy metal poisoning. Bryna refers to Bryna Siegel who wrote The World of the Autistic Child and is very much in the autism mainstream. Handley is upset because Autism Speaks is sponsoring a conference hosted by Jump Start in San Francisco this Friday [March 9th] at which Siegel is the keynote speaker. This is why.

Bryna Siegel diagnosed my son. My son was the first client of “JumpStart” when it was still a part of UCSF and just in its infancy. Bryna Siegel told us that the GFCF diet was a “placebo for parents.” She has testified in court for vaccine manufacturers to ward of Thimerosal lawsuits (something she does not disclose to you while telling you the vaccine-autism link has been disproven.) She thinks the Danish studies thoroughly refute the Thimerosal-autism hypothesis. She told us our son had no “theory of mind” and that he’d probably never talk.

A parent who attends this workshop and asks a question about biomedical treatment will be told by an “expert” that biomedical treatment does not work. I should know, that’s what she said to me and my wife.

And, that’s my point about Autism Speaks: way too much Bryna and not enough Bernie.

Handley believes that there is an autism epidemic caused by mercury in vaccines. He believes in special diets, supplements and chelation therapy. He is using them to try and cure his son. He is mad at Autism Speaks founders Bob and Suzanne Wright because they have not publicly embraced and endorsed DAN and ARI. He finds this particularly galling because their autistic grandson is being treated by a DAN practitioner.

But that is not the whole story. The Autism Society of America [ASA] and ARI announced a research partnership in October last year. But Rimland died shortly afterwards and there is little evidence on either organization’s website of progress in this area. At the same time Autism Speaks has been making real headway. Its video, Autism Every Day, received widespread coverage, including a showing at the Sun Dance Festival and was heavily promoted among politicians in the run up to approval for the Combatting Autism Act. Autism Speaks marked the anniversary of its successful merger with the National Association for Autism Research [NAAR] in February by finalising a merger with Cure Autism Now. [CAN] Autism Speaks was quick to announce its role (courtesy of CAN) in the recent widely publicized report of the Autism Genome Project. Autism Speaks has also established itself in the UK and in Canada. While its US website still affirms its commitment to

Collaboration means compromise. Working in the mainstream means that you adapt to the consensus. In the UK the consensus is more congenial to autism acceptance than it is in the USA. So Autism Speaks has adapted. Some advocates for neurodiversity remain deeply suspicious. I tend towards a cautious and watchful acceptance of their good faith, in the UK at least. Handley, on the other hand, is outraged because he suspects that Autism Speaks are going to drop their support for biomedical interventions to cure autism and accept that autism is more genetic than environmental. These are his complaints against Autism Speaks.

1. You do not mention DAN! or biomedical treatment on your website, and you have no link to DAN! or ARI or any of the groups on our side of the fence.
2. When you eulogized Bernie Rimland on your website, which would cause him to roll-over in his grave I am certain, you did not even mention biomedical treatment or recovered children, this is a glaring, glaring omission that speaks volumes about the mindset of the people running your organization.
3. Your scientific advisory board is populated with some of our world’s worst enemies, including some who have stated on the record that there is no autism epidemic. And, your research choices support this. (The only environmental research you can claim to have sponsored deals with prenatal insults with the notable – and commendable – exception of Richard Deth).
4. When I met with AS in the Fall, I asked a simple question: “Are you sending anyone from your organization to the DAN! Conference?” After some silence and stumbles, everyone turned to Andy Shih and his answer was basically “No.” The only person in the room more annoyed with this answer than myself was Katie Wright.
5. None of the research ideas presented to you by Laura and Lyn have received further study or consideration, as far as I know.
6. Kevin Barry, our former President, was hired by Autism Speaks. On his first day of employment, Mark Roithmayr informed Kevin that he was only there “as a favor to Katie” [ the mother of Bob and Suzanne Wright’s autistic grandson]7. You succeeded in completing alienating Deirdre and Don Imus, our community’s most important public advocates.
8. The clarification by Alison Singer regarding her unambiguous statement to the Wall Street Journal only further clarified how far Autism Speaks is from the environmental camp. I’m pretty sure we are soon going to see funding to try to unravel the “genetic epidemic” we are experiencing.

I will not go into all these points right now. I expect other Autism Hub bloggers will have something to say about this. Handley ends by giving the email addresses of some Autism Speaks luminaries for you to complain to. If they have managed to annoy Handley so much I suggest that congratulations and encouragement to do more of the same are in order.

I have just started watching the video of the debate between David Kirby and Arthur Allen on the subject of autism and vaccines. Kirby wrote a book, Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy which starts from the premise that the rapid growth in recorded cases of autism in the USA that began in the early 1990s represented a real growth in numbers and could not be explaind by increased awareness, better diagnostic procedures or a change in the criteria. There had to be an environmental trigger. At the same time changes in the mandatory vaccination programme for children in the USA increased exposure to thimerosal, a preservative that contains ethyl mercury.

I was looking forward to the debate. But within minutes I was hitting the pause button and diving into my archive of autism related papers. Kirby began, quite rightly, with a discussion of epidemiology. But his version seemed at odds with what I thought I knew. Still, this was an important debate. Kirby must have checked his facts beforehand. So I went to check mine.

Kirby’s Fact 1.

In the 1980s autism prevalence in the USA was between 1 and 2 in 10,000

If anyone has a reference to an epidemiological study for this extremely low figure I would love to have it. When Lorna Wing surveyed the major epidemiological studies carried out between 1966 and 1992 she referred to two studies in Utah (Ritvo et al 1989) and North Dakota (Burd et al 1987) that found rates of 4 and 3.3 in 10,000 respectively for DSM III autism which use very similar criteria to Kanner’s criteria. She also mentioned a study by Treffert which found a prevalence of 3 in 10,000 in 1970 in Wisconsin. When I considered Wing’s survey in an earlier post I remarked upon the robust nature of the figures. Researchers who combined consistent epidemiological methods with Kanner’s diagnostic criteria found rates of between 4 and 5 in 10,000.

Kirby’s Fact 2.

In the late 1990s autism prevalence in the USA was 20 in 10,000

Kirby offers no citations for this figure. Probably the most well founded study in the USA in the 1990s was by Yeargin-Allsopp et al in Atlanta in 1996 which found a rate of 34 in 10,000 in 3-10 year olds. It was reprinted in JAMA in 2003. In the same edition Fombonne considers this an underestimate and thinks the 5 to 8 year olds in the study provide a more reliable estimate of 41 – 45 in 10,000. (JAMA 2003 Volume 289 Issue 1.)For comparison Wing and Gould found a rate of 20 in 10,000 in the Camberwell study in 1979. This study confined itself to children with learning dificulties in special schools and never looked at children in mainstream classes where most autistic children are found today.

Kirby’s Fact 3.

By 2000 autism prevalence in the USA was 40 in 10,000

Again there is no citation. And autism prevalence in whom? What is the age cohort?

Kirby’s Fact 4.

By 2004 autism prevalence in the USA was 60 in 10,000

We do have a lot of epidemiology for this figure.It is supported by the Medical Research Council in the UK and the Centers for Disease Control in the USA. But it is usually taken to mean that we have now reached a reasonably accurate estimate of prevalence figures for the entire autistic spectrum across the entire population. Kirby sems to be using these figures to suggest a year on year increase in incidence which is not the same as prevalence. Generation Rescue made a similar mistake last year which I commented on.

By 2004 th USA figure of 60 in 10,000 was the same as in the UK. But the USA had 40 in 10,000 with autstic disorder and only 20 in 10,000 with other ASDs. In Britain the figures are reversed: 20 in 10,000 with Autistic disorder and 40 in 10,000 with other ASDs.

Kirby’s explanation is simple. Here in the UK we only ever had half the thimerosal in our vaccines compared to our American cousins. So we only got half the autistic disorder. OK. Thimerosal causes autistic disorder. There is a linear relationship. Double the thimerosal and you double the autistic disorder. So what causes PDD-NOS and Asperger Syndrome? Why should they be twice as prevalent in the UK as in the USA? Is that environmental or genetic? Perhaps we Brits are naturally more high functioning than the Yanks 🙂

By this time I was beginning to get a little bit sceptical about Kirby’s figures. He actually did mention a source for his 40 in 10,000 with autistic disorder, Brick Township. I remember that one; 40 in 10,000 for autistic disorder is correct. But the figure in Brick Township for other ASDs was not 20 in 10,000. it was 27 in 10,000. 67 in 10,000! That is a lot of autism, except for one fact. It was a very small sample; 60 children aged 3 to 10. The authors acknowledge the problems in generalizing from their data.

As mentioned earlier, the major limitation of this study was an inability to ascertain higher functioning individuals whowere not in any special education class in public schools or hadnot been seen by participating clinicians. Consequently, becauseof these case-finding limitations, the results from Brick Townshipmust be considered a minimal prevalence for autism. Categoricaldistinctions between autistic disorder and the other ASD wereprobably limited because the ADOS-G has been found to over estimateautistic disorder relative to PDD-NOS.Also, becauseclinical assessments could not be conducted for 17 children andthe diagnosis had to be based on records alone, the reliabilityand validity of the diagnosis for those children is limited. Discriminationbetween PDD-NOS and autistic disorder also may have been influencedfor these cases given that over 56% of the children who participatedin the clinical assessment were determined to have autistic disorderin comparison to only 27% of the children assessed by record reviewonly. Finally, the prevalence rates for autism obtained in thisstudy must be generalized with caution since the community wasselected for study because of a suspicion of increased numbersof children with the disorder. Studies of larger populations,such as one that included surrounding communities, may yield differentfindings.

They may indeed.

Kirby’s Fact 6

Denmark removed all its thimerosal way back in 1992 and it has a rate of only 8 in 10,000.

Yes, except that according to this study autism rates went up in Denmark after they removed the thimerosal. Actually the base rates for autism in this study were so low it is ridiculous, less than 1 in a 1000 throughout the seventies and eighties. That is less than Brask found in 1972 in Denmark for Kanner’s autism. (4.3 in 10,000) A more recent study suggests the real rate for ASDs in Denmark is closer to the 34 in 10, 000 that Yeargin-Allsopp found in Atlanta in 1996. the authors conclude:

We found that the estimated prevalences of the PDDs studied were probably underestimated. Furthermore, the increasing prevalence and incidence rates during the 1990s may well be explained by changes in the registration procedures and more awareness of the disorders, although a true increase in the incidence cannot be ruled out.

So much for Denmark then. I cannot say that I am looking forward to the rest of this debate if this is the standard of evidence employed by Kirby. But I will resist the temptation to fast forward to Arthur Allen. I will do my blogging duty. Speaking of Arthur Allen, he has written about the debate on his blog and is open to comments. Kirby, despite boasting that whenever he writes on the Huffington Post he goes straight to number one, has yet to share his thoughts on the debate with a wider audience.

STOP PRESS Kirby has made the slides from his presentation available on his website. I wont be downloading them just yet. I don’t want to spoil the ending.

The Winter 2006 edition of Communication, the quarterly magazine of the National Autistic Society contains an opinion piece, “Biomedical Interventions in Autism” by Lorene Amet. Unless otherwise indicated all quotes are from Amet’s article.

She claims that,

“A previously rare childhood developmental condition seems to have become common in ten years! This does not seem to be a matter of changing definitions, ascertainment bias, or case-finding methods. What this may tell us is that the role of environmental factors in autism is greater than previously envisaged.”

But according to a National Autistic Society leaflet, (NAS 1997)

“The best estimates of the total prevalence of autistic spectrum disorders are those based on the Camberwell and Gothenburg studies, because these focused on the whole spectrum and not just specific sub-groups.”

The Camberwell study (Wing and Gould 1979) found a prevalence of 20 in 10000 for autistic spectrum disorders amongst children with IQ less than 70. The Gothenburg study (Ehlers and Gillberg 1993) found a prevalence of 71 in 10000 for autistic spectrum disorders among school children with an IQ greater than 70. These studies were published in 1979 and 1993 respectively. So, when every newspaper and magazine report seems to include the obligatory statistic that, “1 child in 166 is now affected by autism,” we should remember that back in 1993 some of the leading autism experts in Europe were arguing that 1 in 110 children were affected then. One of their most trenchant critics, Eric Fombonne (1997) carried out his own epidemiological studies (Chakrabarti and Fombonne 2001, 2005)) which went a long way to confirming Wing and Gillberg’s position.

I fail to see the point of Amet’s remark “the explosion of autism diagnosis throughout the developed world continues to throw an uncomfortable light on the traditionalists within the autism community,” when, in fact, the explosion only serves to confirm what the traditionalists established during the 1990s, that when autism is understood as a broad spectrum disorder it is more prevalent than was suggested by previous studies that focused on the narrow portion of that spectrum first described by Kanner (1943).

Whether there has also been an increase in actual numbers alongside the increase in diagnosis is unknown. Fombonne (2003) argues that the few incidence studies we have are inadequate to the task. He also points to the extreme weakness of the evidence in support of a new environmental influence that might explain any secular incidence in autism in recent years. Amet is equally tentative about possible causes.

“32 reports … suggest that it [heavy metal toxicity] could be implicated.” There is a “possible association with autism” for “diet and food sensitivity; profound vitamin, minerals and fatty acid deficiencies; some abnormalities in purine levels and essential amino acid levels; as well as some cases with hormonal or cholesterol metabolism abnormalities.”

The one study she cites goes to show how tentative those links are. The Vargas paper (2005) is inaccurately reported as a study of “11 post-mortem brain tissues of children with autism.” These ‘children’ ranged in age from 5 to 44 years. If there is active neuroinflammation in subjects born in the 1960s it is unlikely that a recent, epidemic inducing toxin is responsible. And, far from proposing a “key pathological role in autism” as suggested by Amet, senior author, Carlos A. Pardo-Villamizar cautiously points out in a press release (Science Blog 2004) that, “it is not yet clear whether [the immune activation] is destructive or beneficial or both.” On the question of treatments he says that “much more research would be needed to establish the validity of this approach.”

Amet is not so tentative about possible treatments. Apparently, ‘could be’ and “possible association” provide sufficient proof to justify the treatment protocol on offer at her Edinburgh clinic. She agrees “that there is at present insufficient published evidence for the efficacy of the biomedical approach beyond anecdotal reports.” In plain English that means that there is no published evidence apart from anecdotal reports.

Amet believes it would be unethical to carry out proper research before experimenting on children because,

“the biomedical treatments that some feel have been shown to lead to recoveries are complex, comprised of several inter-dependent parameters, and carried out over a long period of time, usually for a minimum of two years.”

So studies on mice, monkeys and in vitro are good enough to suggest treatments but those treatments cannot be subject to clinical trials. This is quackery pure and simple. Amet argues that,

“It is only through thorough examination and biomedical testing that the individual child’s symptoms can be understood and treatments tailored accordingly.”

Autism is presently only diagnosable on the basis of observable behaviours. Amet would like to be able to diagnose on the basis of biomedical indicators. But here she suggests that it is already possible to match autistic symptoms to biological markers.

Once these biomedical problems are identified they will be treated with dietary and pharmaceutical interventions that will also cure the autistic symptoms. Biomedical interventions are often used in conjunction with applied behavioural analysis on the premise that the child needs to be re-educated in what it is to be normal while they are being recovered from their autism.

Quite aside from the arrogance that presumes such knowledge of the biochemical predictors of behaviour and competence to manipulate them successfully, there is the complete denial of any autonomy for the child in determining who they are. The child is a tabula rasa with no opportunity for influencing the outcome of their own development and education.

While every child is different,

“children with autism have a set of characteristic clinical complaints. And these are very well-substantiated in the current peer-reviewed medical and scientific literature.”

It would help if Amet could provide a list of these “characteristic clinical complaints” and some reference to the relevant literature. In contrast to Amet’s claim it is my understanding that the clinical picture in autism is heterogeneous. Common clinical characteristics have so far proved elusive. I remember David Amaral of the MIND Institute at UC Davis, speaking at the International Autism Conference held by the NAS in London 2005 showing a slide that said,

“Autism is an enormously heterogeneous disorder. It is likely to have a variety of etiologies and ultimately to be considered distinct variants or phenotypes of the same disorder (Autism type A, Autism type B etc.)

To date, research on autism has been too fragmentary to allow determination of the biomedical and behavioural characteristics that define different phenotypes of autism spectrum disorder.”(Amaral 2005)

Amet also claims that,

“The biomedical approach to autism is currently endorsed by over 500 medical doctors, throughout the world in a total of 23 countries. What these practitioners advocate is that autism is treatable. They uphold the principle that children with autism not only have the right, like any other children, to full medical investigation, but that the investigation must be comprehensive.”

Amet is wrong and she knows it. The five hundred medical doctors do not exist. She is referring to the DAN list of registered practitioners who have agreed to the DAN protocol for treating autism. Amet know that not all of these practitioners are medical doctors because she, a research scientist, is on the list. So is Ken Aitken, a psychologist and associate of Amet’s in the Autism Treatment Trust. Neither is qualified to call themselves an MD. The DAN list also includes naturopaths, homeopaths and other ‘alternative’ therapists.

At the time much was made of the fact that Kerry was not a DAN doctor. He is now. After he killed Abubakar, Kerry was admitted to a DAN conference, completed an eight hour intensive training programme and joined the “500 medical doctors, throughout the world” whom Amet looks to for endorsement.

Those “500 medical doctors, throughout the world” also include a Dr. Schwartz in California who is not allowed to examine boys without a chaperone because of previous misdemeanours. The Medical Board of California (2006) is currently trying to permanently revoke his licence to practise medicine after he persistently broke their injunction not to examine boys without a chaperone.

He chose to get round this problem by inventing a novel way to “uphold the principle that children with autism not only have the right, like any other children, to full medical investigation, but that the investigation must be comprehensive.” He interviews their mothers instead. And, without ever seeing the boys, orders a series of tests and prescribes treatments for them.

This is the company that Amet keeps. These are a few of the medical doctors who endorse her biomedical approach to autism. I am surprised that the NAS would publish an article that is so weak on logic, so riddled with factual errors and, above all, so ethically compromised. It is no more than a thinly veiled advertisement for her clinic, a commercial for autism treatments that are not supported by the literature rather than a serious discussion of that literature.

This letter has been mailed to correspondence@option.org and posted here.I have just read your press release announcing Raun Kaufman’s appointment as Director of Autism Treatment Center of America. I fully endorse the sentiments expressed by Kevin Leitch in his Open Letter to Raun Kaufman. I too am appalled to see that you are exploiting the deaths of Katie McCarron and Ryan Davies to promote your organization. This is in direct contradiction of the wishes of Katie’s family. Katie’s grandfather, Mike McCarron has paid eloquent tribute to Katie’s memory on Kristina Chew’s Autism Vox that contains these words.

“I can assure you that no one will describe her murder as “understandable” or devalue her in anyway without my personal challenge to them and the organizations they represent.”

Please read it in full and you will learn that Katie was a vibrant, happy girl who was much loved and loving in return. Her life was full of hope and not the hopelessness that you suggest.

Omissions and Inaccuracies

I was also concerned by the factual omissions and inaccuracies in the press release. Most glaring was the failure to correctly identify Ryan Davies as having Fragile X Syndrome. Or are you suggesting that SonRise can also repair abnormalities on the X chromosome?

The prevalence figure of 1 in 10,000 that you cite has no basis in fact. The landmark epidemiological study in the UK established a prevalence of 4.5 in 10,000. (Lotter 1966) When Lorna Wing (Wing and Gould 1979) discovered that autism was not a narrow disorder but was in fact a broad spectrum this raised the prevalence to 20 in 10,000. At this time most cases of autism were thought to be associated with mental retardation. The introduction by Wing (1981)of the work of Hans Asperger to the English speaking world reversed that. By identifying and including autistic people with average and above average IQ the prevalence rates do indeed approach 1 in 100.

The press release initially uses “autism” to refer to

“children [who] will never speak, attend a typical school, make friends, or even learn to dress themselves. Raun K. Kaufman tells parents something very different. He offers hope, help, and a concrete blueprint to reach “unreachable” children.”

It goes on to say that,

“According to the National Autistic Society, it is estimated that over half a million people have autism in the UK, with more than 2 million people affected by the disorder.”

It later refers to autism as one of many autism spectrum disorders.

“Autism treatment specialist Raun K. Kaufman is currently on a 10-city free public lecture tour across the UK and Ireland this September entitled: Breakthrough Strategies for Autism Spectrum Disorders. The specific strategies he will address have been shown to have an immediate impact on children with Autism, PDD, Asperger’s Syndrome, and other related developmental challenges.”

Anyone unacquainted with the facts or the way that the terminology has changed over the years could be forgiven for taking this to mean that there are now 500,000 “unreachable” people with autism alongside all the others on the spectrum and presume that they make up the “more than 2 million people affected by the disorder.”

According to the NAS there are an estimated 528,500 people, both adults and children, on the autistic spectrum in the UK. But this figure encompasses the entire spectrum: Autism, Aspergers, PDD-NOS etc. It includes over 400,000 people with average or above intelligence. With proper support in childhood this group will require less support during adult life and many if not most will be completely independent. There are only around 23,000 people with the severest forms of autism described by Kanner and measured by Lotter and an estimated 93,000 with other spectrum disorders who will probably require some level of support throughout their lives. The 2 million refers to their immediate families, who are indeed affected by a triad of impairments, if we define that triad as impairments in the health, education and welfare services available to autistic people and their families.

Misinformation and Misunderstanding

Compared to the unethical exploitation of these two children’s murders it may seem unduly pedantic to go on to question the accuracy of the information. But misinformation leads to misunderstanding. It is this lack of understanding that fosters feelings of helplessness and hopelessness in parents. Your publicity material strongly suggests that autism is a hopeless condition unless people turn to you in order to

“learn how to help their children, for the first time, to begin to cross the bridge from their world to ours.”

By talking up the hopelessness of autism in this way you are no better than the snake oil merchants who tout biomedical cures for autism on the back of a spurious autism epidemic. And what of the parents who come away from your “free public lecture tour” convinced by your message of hopelessness but unable to afford your package of hope or persuade a charitable foundation to fund it for their child? Who will bear the ultimate responsibility if any of them follow in the footsteps of Karen McCarron or Alison Davies?